Advocacy
SKIP of New York is a leader in advocacy, protecting the rights of medically fragile children and children with developmental or intellectual disabilities. Please, see below our Advocacy News/Alerts.
We challenge agencies and their staff who do not follow federal Medicaid rules, delay or deny services, or make up rules of their own without following established regulatory procedures.
We participate in several work groups to reform and facilitate access to services.
We notify families of upcoming changes to programs that will affect them.
Our Fear Hearing Coordinator represent families at Fair Hearings when services are denied.
TAKE ACTION – Call or write to your elected legislators
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To celebrate the anniversary of the Americans Disabilities Act on July 26th Nina B. wrote the following on her Facebook page.
The kind of disability rights activism I chose involves academia and a PhD, hoping that I can change how institutions treat the disabled from inside the system. As important as that may be, not a week goes by where I don’t acknowledge that the only reason I’m able to do so is because of all the ones who have and continue to fight for my right to have equal opportunity in society. On this anniversary of the ADA let us acknowledge the brave people who have fought, let us keep in mind all we have gained, and let us work toward accomplishing all that’s left to do.
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What else is there left to do, you ask?
As the daughter of an immigrant, I have been consistently reminded throughout my life that I would not have had the same quality of life if my father had not come to America. I distinctly remember being 10 years old on a trip to visit family in Greece and having to explain repeatedly to someone that no, I could not swim independently because no, my disability cannot be cured by “trying harder to use muscles.”
I wasn’t supposed to deal with that here.
At 12 years old living in Queens, I overheard someone tell my parents that they were “amazing” for raising me. I quickly learned that my existence is supposed to stress people out enough to make them want to leave. Not doing so is apparently God’s work.
At 13 I took the public bus for the first time and watched the driver look at me, sigh, and say “this is just not my day” as he pressed a button to open the ramp.
The first few days of High School I ate lunch alone because all the other disabled people had a different lunch period. I latched onto the first able-bodied people that spoke to me, and soon learned the ones that would only do so to try to see if I was “retarded” enough to laugh at.
At 19 I sat front row in a philosophy lecture where the professor told the entire class that if he was in a wheelchair, he would shoot himself. When confronting him in office hours by saying that his statement was very inappropriate, he said: “I’m sorry you’re misinterpreting what I said. That was a compliment. It must be really difficult. I could never do it.”
By the time I was 20 years old, I had scrolled through hundreds of names of disabled people who were victims of “mercy killings.” I read stories in the news about people killing mass amounts of disabled people to “end suffering.” I read incessantly about the eugenics movement, about freak shows in Coney Island, about Willowbrook. I watched as movies and news articles about people like me killing themselves were romanticized by the able bodied.
No one talked about our lives, just our deaths. Makes sense if the assumption is that our greatest wish is to either become able bodied or die. No wonder the medicaid cuts, the lack of access to affordable accessible housing, the inability to get married or hold a job without losing the kind of health care appropriate for us. Our existence to them is precarious enough to not take seriously. We’re only valuable when we’re suffering—when we can be their tragic, almost-beautiful image of inspiration.
By the time I turned 21 I was very attuned to when people would take pictures of me and my friends in public spaces. We learned how to ask them to delete it. We learned to hope they listen and don’t walk away with a piece of us. We learned to wait down at the end of the subway platform for the men to go in the elevator first, so we don’t have to be alone with them in such a small space. We learned the statistics. How much more likely we are to be victims of abuse. We tried to quell the anxiety of having targets on our bodies by learning the best places to hide pepper spray in our wheelchairs. We’re already at eye level with everyone’s midsection, so aim for hitting his privates if being threatened. Share locations via iPhones if going on a date with an able bodied guy. Actually, keep sharing it indefinitely. We learned what parts of our city we should never travel at night alone in. We learned what places we can hardly travel to at all because most of the stations in NYC don’t have elevators anyway.
When I was 22, my friends and I paid for bottle service at a club for one of our birthdays. Twenty minutes in when more able bodied people were filling the crowd, staff picked up everything off our table and escorted us out of the club into the restaurant section. When we asked why, they provided no explanation. Eventually, after repeatedly asking, they let us go back to our table at the dance floor. We spent the night warding off middle aged men asking about our diagnoses with a certain excitement in their eyes that we have come to fear.
That same age, I began graduate school applications. I almost missed my first PhD interview because all six elevators in the building were broken. Thankfully, we were able to have the interview on the first floor. The professor said, “This must have been pretty stressful, you seem so … calm?” I shrugged, “If I got that upset at every threat of discrimination, I wouldn’t be a functional person. I wouldn’t be able to leave the house.” I didn’t get in to the program.
Another PhD interview consisted of spending 15 out of the 20 minutes being asked in a variety of ways whether or not I’d be able to withstand the program. If I could handle “this kind of work” or “really long days” or “getting to class everyday.” By the time he read my resume to understand my credentials and (hopefully) place me on the same playing field as all the other applicants in the waiting room, I had 5 minutes to try show I was more qualified. Everyone else had 20 minutes. Obviously, I didn’t get in.
Finally, an interview went extremely well. Of course, my first thought was that I must have missed something. Maybe I was being too hopeful. When the acceptance letter came in the next month, I tried to convince myself I must have been at the bottom of their acceptance list. The last resort. Or maybe just something to check off a diversity box. It’s an embarrassing thought for me to look back on now, but I shouldn’t be hard on myself. Of course I thought that, I learned in enough spaces over the years that this wasn’t supposed to be my place.
At 23 years old in my first year of the program, my clinical placement was at a nursing home/rehabilitation center where I would meet with seven residents under the staff psychologist. Every week for the first few months someone in the building would assume that I lived there. “Are you coming to bookclub?” or “What room do you live in?” were constantly questions I would have to smile politely to for the sake of my career. Six months in, a new security guard wouldn’t let me off the premises until she was able to confirm with 2 different staff members that I wasn’t lying to her about working there. The threat of institutionalization is never far off.
A few months ago while on the bus with one of my able bodied friends, a random woman came up to them as we were getting off and said, “That’s so nice you’re taking her out today. God bless you.” When we got off the bus, I expressed how condescending that was to my friend, who then said: “I hear you, it must be annoying. But aren’t there bigger problems in the world?” I was silent. I didn’t know how to explain that the world assuming I don’t usually leave the house isn’t a light statement. We are seen as weak, vulnerable, incapable. Too different. Subhuman. Something just to gawk at. To take advantage of. It has consequences. It builds policies. It builds barriers. It causes all of this.
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The passing of the Americans with Disabilities Act was an amazing advancement in our fight for equality. I’m grateful for the life it has afforded me, and for all the brave people that made it possible everyday. Here’s to all we have accomplished & all that’s left to do.
Nina B.
Clinical Psychology Doctoral Student
Long Island University-Brooklyn
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ADVOCACY NEWS / ALERTS
ADVOCACY NEWS / ALERTS
New York State Budget – CDPAP – March 2019 – Governor Cuomo’s budget proposal unleashed an unprecedented attack on seniors and the disabled, repealing the state’s popular and successful Consumer Directed Personal Assistance (CDPA) program and replacing it with a watered-down version that will eliminate over 550 fiscal intermediaries across the state for no reason, slash funds for non-PA wages for those FIs that remain by over 500%, and begin the process of shifting to one entity for the entire state that will run the program with all the warmth and heart of your local cable company. Read more…
Disability Rights Advocates class action lawsuit against the New York City Department of Education, alleging violations of the Individuals with Disabilities Education Act and other anti-discrimination laws on behalf of a class of students with disabilities who attend school in the Bronx and are being denied legally-mandated special education services. The attorney’s representing the class of students are seeking access to student records. A copy of the Notice of Potential Disclosure of Student Records may be found here. This notice may apply to you if you are a current or former student, or parent of a student who had an Individualized Education Program prepared by the New York City Department of Education between August 1st, 2016 and February 22nd, 2019. If you or your child fit this profile, please take the opportunity to read the notice material regarding the potential disclosure of you or your child’s educational records. Read more…
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